The chronicle of a family thriving in the middle of a nightmare. You'll laugh a lot more than you expect. Promise.

Thursday, November 18, 2010

Spinning

We saw two of Simon's peers from our birth group last weekend and Laura and I are both reeling from it a little.

Seeing these boys comes on the cusp of us beginning a major round of assessments to prepare for April, when Simon turns 3, he ages out of his Early Intervention Program and will begin...something else. What that "something else" is, we aren't exactly sure and it's freaking us both out a little.

The assessments are the first part of the development of Simon's Individualized Education Plan (IEP). An IEP is the legal document that says what Oakland Unified School District must provide for him, based on his needs- both educational and medical. Depending on what these assessments find and what the district can provide, we could end up in any number of situations, including being told Simon:

1) can go to a regular preschool (a whole other can of worms to be discussed later)
2) can be in a class for Medically Fragile kids through the district (might be the best choice?
3) will be in a "special ed" preschool which could include kids that are severely cognitively and socially delayed (not ideal since Simon seems to be catching up and needs to model off "typical" kids)
3) will go to something in another school district because there is not an appropriate class for him in our school district (possibly a very cool school in Berkeley for mostly hard of hearing/deaf kids that has mainstream kids plus onsite speech and OT)

It's not news that he's delayed. We know he's A LOT smaller than other kids his age. He's talking all the time but not saying much (not great communication). He doesn't run, jump or and hates to walk any sort of distance. Still no eating. We know this intellectually but mostly it's just sort of in the background.

Then we hang out with typical kids that are his age, who are running and riding tricycles, talking in complete full sentences, and having complex imaginary play, and those delays, that gap between "typical" and "Simon" suddenly feel like the Grand Canyon. It's a little shocking.

We don't quite have all the info to know if he's as behind his peers as he was a year ago or if he's catching up. I keep wondering if the differences are just more apparent but not as severe or if the train is really picking up speed and going to leave us behind forever. And that is giving me major flashbacks to my own struggles as a kid.

When I was 5, a bunch of things happened all at once, including my parents splitting up, moving to a new city, leaving my preschool and starting First Grade part-way through the year with a really strict and not particularly warm teacher. The combination kind of knocked me on my 5-year old butt and looking back, set me up for some struggles academically and socially.

Because I knew how to read, folks decided that I should start First Grade instead of going into Kindergarten. It was the thing to do those days- put girls ahead a year if there was a question (and hold boys back a year). Unfortunately, my number/math skills and handwriting were very weak and I was working some big stuff emotionally out about all the changes. I ended up struggling with math and handwriting my entire academic career and had a hard time connecting with my peers until I was an adult.

I was behind in some areas. Kinda like Simon.

Most of the tears I shed in my childhood were borne of sheer frustration and panic that I was getting left behind academically (even with extra help) and not quite fitting in socially. The thing I remember most distinctly was feeling like I was never going to learn things, particularly in math. The things we were learning were building on the things I was already supposed to know (and was struggling with) and that the train was picking up speed and I was never going to catch it and be able to chill for a minute and catch my breath. I wanted to give up on trying so many times because it felt like it was never going to end and I just had to keep running or I'd get left behind and...

There's a chance he might not ever catch up. He might always feel like he's behind everyone else and will never catch up. And I can't really fix it. I never want Simon to feel that pressure, that hopelessness, that feeling of being totally overwhelmed. And I'm sure he will. I guess I should re-read my post about not being able to protect kids from hurt and instead promote Resilience.

As we're at this crossroads with Simon, when we have so much attention focused on his development and "catching up" and "being behind", I'm struggling to keep my perspective. Some days are certainly easier than others. Lately, not so much. Especially since his speech assessment found "processing" problems, which sounds sort of different from "delayed". It actually makes sense, given what we're seeing in terms of how he's picking words up and using them, or not using them as the case may be. Just not sure how to put in in context, so we'll wait for the report.

I'm trying not to freak out about the possibility that he's not just delayed from his hospitalization and will catch up but that he could have some lasting, permanent cognitive impairment. He was given a crap ton of meds (I should look through his charts and count. I bet it's over 20, including some really intense antibiotics) and had low oxygen saturation while he was going into heart failure and septic twice and... It just never occurred to me until now that he could have lasting cognitive issues on top of the health issues.
Then the spinning about money starts...

If he gets "OK'd" to go to a typical preschool, then we're worried about cooties and a high teacher to student ratio to help with his tube feeding etc. The kinds of schools that have better student/child ratios and kids that tend to not come to school when they're sick because they have stay at home parents or nannies cost an arm and a leg and tend to be pretty homogeneous in terms of race and class.

So...we're wondering if he'll be in some inappropriate class through the district or how the hell we'll afford a private fancy preschool if that's what looks like the best option, when we're already trying to cut it on $60,000 for a family of three in the Bay Area and 1/3 of our income goes to medical expenses and we're already getting a cut on rent for our 1 bedroom apartment and despite the fact that our parents are already helping us financially, we still fall within $100 of our income every month. Then my Protestant (funny b/c I wasn't raised Christian) work ethic tape starts up and I feel like crap for being 34 and getting financial help from our parents and wondering if I'm totally irresponsible for having a child when it's ended up meaning we can't cut it on our own right now and wondering when I will ever not need all this damn help from everyone.

Some days I'm so grateful and thankful and oh-so-Zen about it all. Other days I want a vacation from my life and to worry about nothing but what movies I'll watch and what to cook and how to decorate a clean, orderly home with all my disposable income.

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About Us

Team Shimmy was started the day our baby, Simon (aka Shimmy), became suddenly ill (8/1/08) with a rare heart condition called Cardiomyopathy. That day, friends and family rallied around us to form Team Shimmy. This team, which has grown to include new friends and strangers from all corners of the world, has sustained us with love, food, kind words and listening ears.
We spent 4 tumultuous months in the ICU at Children's Hospital Oakland. Simon has been steadily improving since that day. He was fed through a tube in his belly (a Mic-key) until December 2013, was diagnosed on the autism spectrum, receives various types of therapies and is still on meds. Oh, and he's the happiest, most engaging kid we've ever seen. Jaime (Mama) works in public health and Laura (Mommy), a former school social worker, stays home to take care of Simon (and to take him to his MANY appointments). To see a 10-min documentary about our family, go to www.youtube.com/watch?v=uGh8dFp2oqk.
This blog is a chronicle of our experience thriving in the middle of a nightmare. You'll laugh a lot more than you expect. Promise.
Contact us at lafitch@gmail.com or jaimejenett@gmail.com